Staying Connected

This season we are going to talk to 7 members of our community about their stories and experiences with VEDS. We’ll hear from several people who have a VEDS diagnosis themselves, including a mom who lost her son to VEDS last year, as well as a spouse and mom of people with VEDS. We also have a returning guest to talk about his experience since our last interview together, about three years ago.

Season 4 starts on September 17 and will be available on all major podcast players and on YouTube.

This podcast is not produced or affiliated with The Marfan Foundation or The VEDS Movement.

Thank you to my Patrons for supporting this show.

Connected Patrons:

Jon Holtom

Support the show by joining my Patreon at patreon.com.translucentone

Source

Dr. Shaine Morris, pediatric cardiologist and researcher at Texas Children’s Hospital, and advocate for our VEDS community, shares how she got involved with the VEDS community and talks about her current research, the CLARITY registry.

To enroll or get more information about the CLARITY study mentioned in this podcast, email Shaine’s research coordinator, Nadia, at [email protected]

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:

Source

Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. Luke was the only one in the family with VEDS.

Heartbreakingly, Luke passed away in October 2021 at the age of 15. Charlene tells us about Luke and his story with VEDS in this interview, and also talks about the emergency and mismanagement in the hospital that resulted in his death. An autopsy revealed he had experienced an aortic dissection and rupture.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:

Source

Dominick Corso was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 44, after a sudden medical emergency that identified three aneurysms: two iliac artery aneurysms and an abdominal aortic aneurysm. This event led to his doctors suspecting a connective tissue condition and sending him to a geneticist who ultimately diagnosed him with VEDS.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Source

Grace Ehrbar was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, at 12 years old after a spontaneous bowel perforation. She is the only person in her family with VEDS. In this episode, Grace shares her experience with the bowel perforation when she was 12, as well as how her knowledge and attitude towards VEDS has changed in adulthood as she learned more about it. She also shares how her diagnosis has impacted her experience and career in the medical field.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

Source

Otto Nitschmann was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 30, after he experienced a sudden splenic artery rupture. This event, combined with his hypermobile joints and his dad’s early death from a brain aneurysm, led his rheumatologist to consider VEDS and order a genetic test.

You can reach out to Otto through his Facebook page, https://www.facebook.com/otto.nitschmann

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Source

Heidi Green’s daughter, Isabella, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2021 when she was 8 years old. For years Heidi asked her pediatrician about problems Isabella had, but was told these things were likely due to her being born premature. When she pushed for genetic testing in 2021, she finally got the answer.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Source

Christopher Underwood was diagnosed with VEDS at the age of 52, after surviving an aortic dissection and complications following the dissection, including the amputation of the front half of both of his feet. His mother died of an aortic dissection at the age of 82, and his cardiologist recommended he get tested for VEDS. In this episode Chris tells us about what he went through with his aortic dissection and complications that followed, and how he’s coped with his diagnosis and the amputations.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Source

Karen DeCoursey was diagnosed with VEDS following her brother, Mike’s, diagnosis in 2017. For Karen, the diagnosis offered answers for many unanswered medical questions in her life, as well as the answer for her father’s death at the age of 49. In this episode, Karen talks about what she went through before and after her diagnosis, including feeling like she was a hypochondriac for many years of her life.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Source

Jonathan Kile was diagnosed with VEDS in 2016 following a series of life-threatening emergencies, including an iliac artery rupture and an aortic dissection. His diagnosis at the age of 42 also offered an explanation for his mother’s early death when he was 5 years old. In this episode, Jon talks about what he survived, how he copes with his diagnosis, and how he feels about the diagnosis of his two kids.

You can keep up with Jon through his blog at www.dontmakemeturnthisvanaround.com

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Source